I asked Dr. Ramirez on his online blog about our condition and my treatment so far. You can read his response below...

http://thefertilityblogs.com/2011/01/dr-ramirez-on-primary-amenorrhea/

Hey girls! Here's an update on me.
I had my endometrium biopsy a few days ago and got my results back yesterday. My dr. said i have a little bit of plasma cells around my uteris. Which means the cells are kinda guarding my uteris which makes it hard for embryos to attach. So she has me taking antibiotics for 2 weeks to get rid of them and i go back for another biopsy to check up! So, just one more extra step! Im just ready to get things going now! So if everything looks good, i think i start all my injections! Then ivf!

Hey - I hope you get started quickly with your IVF. Best of luck and hoping that that's your successful cycle. Question - why did your RE recommend a biopsy?

Hey AKD, my beta is on Feb 1st :)

I had the cramps around the time when I would have ovulated and have had cramps on the days when implantation could have happened bad ones. I keep thinking I'll get my period any second. My temps still haven't dropped and no period yet so I'm starting to hope a little that we could have some good news. My breasts still hurt a bit. Have been really tired. Have had weird headaches and a few dizzy and barfy moments. Also my digestion is messed up so maybe I'm fighting something?

I'm trying to pay attention to how I feel so that I'll know for next rounds :)

Jenn I hope you get to start soon - good news that you just need some antibiotics. Glad things look good!

Thanks Andrea! I am so glad just antibiotics and not surgery or something crazy! AKD i think my dr had me do the biopsy to see if i have plasma cells around my uterus, which i did have a little. Maybe she wondered why my iuis wernt working. I go on tues for another biopsy to check to see if the plasma cells are gone! Then possibly start injections! Andrea did u do an iui? Sorry ive been bad at staying updated. Your symptomes sound good. I never felt dizzy, barfy, or breast soreness! I really hope its good news!!!! When do u know for sure?

nope we just did injections and tried on our own - I wanted to do the IUI though

bad news :( my temp dropped and I got my period this morning

Andrea - oh no, I'm so sorry hunny! It always sucks to get a negative result. But hey, it was only your first try. Even for normal couples it takes 6 - 12 months .. Stay strong, you had follicles / eggs / good lining / good estrogen levels. I am very hopeful for you. Are you going to start medication again on your CD3? Some changes that I may recommend for next cycle, perhaps try the IUI, it costs about $300 if you're doing one and about $500 if you're doing them back to back, which I always do. Also, talk to your doctor about progesterone support - did he check your progesterone at all after your ovulation? IUI does slightly increase your chances for conception, so if money is not too much of an issue - I would say try going down that road. Good thing you kept a list of your symptoms from this cycle. Although for me A/F and pregnancy symptoms are almost the same so it's hard to tell. Something I've started to do here and there is massage the bottom of my big toes in a circular motion - they are connected to your hypothalamus and I heard it makes a difference (there's a video for it on youtube)? So hey why not lol.

thanks ADK : ) I didn't think I'd be so upset because I was less hopeful than the first attempt but I guess it's always hard no matter what.

The clinic wants me to wait a month and then start - so annoying always this month wait in between. I can't even get in to see my Dr until Feb 14th to discuss next steps argh.

I def want to try IUI and progesterone support. They never checked my progesterone which is also frustrating and I asked specifically about it.

There are some other spots that are supposed to work - around your ankle. I friend of mine went for reflexology training and while they spent a few weeks training and practicing they all got pregnant! So it can't hurt right?

I'm so bummed and have a 3 hour exam tomorrow that I don't even care about right now ak!

Hang in there Andrea. You have come a long way and atleast the new cocktail worked great for your follicles. Even my doctor had said that it can take upto 3 to 5 tries till you get pregnant. So you are just another step closer :) Us amenorrhea patients need lots and lots of patience.

Thanks AKD for posting that link regarding your question to the doc. That was so helpful. How is everything going with you?

Jenn27: thats great its only antibiotics to cure the plasma. I hope they work and the plasma diminishes. Hopefully that is what was holding you back from conceiving.

As for me, im just waiting for my next period so that I can go in for my baseline scan on Day 2 and hopefully have some follicles so that i can start my injection. I HATE waiting a whole month of AF (I feel your pain Andrea).

Andrea - I know how upsetting this can be and it sucks that you have a 3 hour exam tomorrow. Best of luck with that. Why do you have to wait a month? I always book my RE appointment ahead of time. Right after I trigger, I book a follow-up. So I know when I find my result, even if it's positive or negative, I'll get to see him without a wait (so I book about 2 weeks ahead). Hang in there - needs tonnes and tonnes of patience to get through this tough journey :( *virtual hug*

hopeful - I'm doing well. Will most likely trigger tomorrow. Please all pray for me, I strongly believe in the power of prayer, any one prayer can make all the difference. When is your period suppose to come?

I actually had asked to book an appointment around the time I triggered but I never heard back - which is typical. So I'll be seeing my RE on Feb 14th :( Also the clinic makes you wait one month between tries to avoid being over stimulated but I'm not going through IVF and am not over stimulated.

My period came this morning :( I was supposed to have my beta on Feb 1st and still might have to go if it lets up at all.

I'll send you my prayers and thoughts - am glad you're about to trigger! yay! hugs!

my clinic just called- BFN
:(

I'm soooo sorry Andrea. I'll be praying for you. Keep trying, it will happen, for all of us!

I had my second biopsy. Painful this time. Get my results back fri or mon. I hate waiting.

My sister's twins got to go home today its been a month since she had them. They are both really healthy. Hope it gives you all hope like it does me :)

Andrea - Again, so sorry that it was BFN. But take heart in the fact that you can ovulate, now it's just a matter of time.

Jen - Great to hear about your nieces. They must be so super cute. Good luck with your results on Friday - hope to hear good news and you can move on to IVF. Question - what is your lining usually before triggering (what's the thickest you get)?

Jen I hope you feel better from the biopsy soon and that you get good news and can start soon. Does your sister have what we do? If so how long did she try and what did she do the time she did get pregnant?

AKD my lining has been around 7mm.

Am thinking of doing IUI next attempt. Just curious what dosage you ladies take and for how many days? I was on 75 repronex and two clicks purgon for 25 days but want to shorten it and want more than one follicle. I'm also asking them about progesterone and estrace. It just seems like a lot of of injections for maybe one follicle with nothing else done. I want to be sure we do everything we can to increase our odds.

Andrea - My RE starts me with 75 HMG (generic repronex), then usually after about 3 days of injections, he bumps up my does to 112, then after about 7 injections at 112, he brings me down to 75. I ALWAYS have at least 3 mature follicles on the day of triggering. I'll tell you what I'm currently taking (and this is my highest lining ever at 7.8mm) and you can talk to you doc about them and see what he thinks

Before ovulation (along with injections):
-estrace (2mg, twice daily)
-trental (400mg, twice daily)
-Vitamin D (1000 IU, once daily)
-Vitamin E (800 IU, once daily)
-Pregvit Folic 5 (prenatal supplements)

then after ovulation and IUI (continue taking all of the above plus the following):
-Baby aspirin (81mg, once daily)
-Progesterone supplements (200mg / inserted vaginally twice daily)
-Prometrium (3 capsules at bed time)

I know this is A LOT so if this cycle doesn't work I'm going to get my doc to take trental out of the equation. I want to keep progesterone and prometrium b/c when I got pregnant, my progesterone was REALLY LOW - so I'm worried about another chemical pregnancy if I was to get pregnant. My beta is on the 12th and my follow up with doc is already booked for the 14th - depending whichever way it goes, I want to see the RE.

Jen - have you gotten your results back? Thinking of you and sending positive vibes.

Hopeful2bpreg - what is up with you? Haven't heard from you in a while.

Thanks AKD!!

Keep us updated and I'm hoping for good news on the 12th!

This info is really helpful. I'll let you know what I do on my next attempt. I think it's important to see what we're all trying and then what works for us.

FYI there are some good relaxation CDs for people doing IUI and IVF from Circle and Bloom. I haven't bought them myself but women from my clinic and fertility yoga class have and seem to love them. Let me know if anyone has tried them. There's a diff 15 minute session for each stage of the cycle.

Andrea - I am 7dpo today and have absolutely NO symptoms whatsoever. So I'm counting myself out of this cycle already :( ... now trying to figure what I can do differently next month. I may try fertility massage and fertility yoga (at home through youtube videos). Can't help but feel a little bummed. My poor DH :( he's so supportive and yet I can't give him what we want the most.

Hi Shirley,
Hi dreamygalzz:

Yay! Great that your ovaries have been found. My ovaries are smaller than normal as well but contain follicles and eggs. Can your RE start you on follicle stimulating hormones to see if there are any follies that respond? Did he do a follicle check on the ultrasound or just an ovary check? Step 1 is that you need ovaries so yay! Step 2 is that you need follicles. When I went for my very first scan, they found 2 small follies on one side and 0 on the other. After starting on injections, I get great sized follicles on both sides. What is your exact diagnosis for primary amenorrhea? Mine is for hypothalamic reasons where my hypothalamus doesn't signal the right hormones to be released so my ovaries don't get stimulated naturally. I also have a small uterus. Did your RE say anything about your uterus size? The fact that your RE is very sure about this makes me wonder. What are your next steps then? Let me know if you go in for a follow up!
Good luck!

Hi AK, he just did a ultra scan and found my ovaries. It's small n my uterus r small too... He didn't do any tests in finding follies.. Which test will tt be? He didn't really say what is my exact diagnosis apart tt is primary amenhorrhea.. :( issue is I'm not married yet so maybe he didn't do the tests...??

Hey,

The follicle scan is done via a transvaginal scan. So if you're not sexually active, the RE would not be able to perform this scan on you. Are you seeing an RE (fertility specialist) or a gyno? I would trust a fertility specialist's word.

Yaaay Shirley. Ok, this is the part where you do a happy dance!!! This is great news that you do have ovaries and uterus. Don't worry about the size of your ovaries and uterus. Once your Reproductive Endocrinologist or a fertility specialist starts you on birth control pills, your ovaries and uterus will grow. This is a great sign. I was where you are 3 years ago. I too was told i had no ovaries/uterus but I do and they have grown with the help of medication and now we are on the road to trying for a baby. Hang in there sweetheart. :)

As for me now, i am on my cd2. Went in for my baseline scan and everything is great except for i only have one follicle on my right ovary. When i got the call later on that dr. micheal has advised to cancel i urged the nurse to let me start on HMG because this would be my 3rd failed attempt and its the same thing cycle after cycle which was low follicle count. And its obvious because i have hypothelamic amenorrhea and my brains not producing the FSH hormore. Low FSH hormone = low follicle count. So i told my nurse that i'd like to start and work on the one follie that i have and hopefully some others will grow with the help of the injections. AND....I got the go ahead!! Happy dance for me. Finally. Lets see now. Please please please keep your fingers and toes crossed for me.

AKD: Thanks so much for your support earlier. We should seriously meet up one day when the weather isn't so brutal. I have my fingers and toes crossed for you aswell. Hoping for good results on Saturday.
Oh...and that you so much for recommending the fertility yoga. I also found this video on youtube that was helpful.
http://www.youtube.com/watch?v=5tlaROqbOQg

Hi I did a ultrasound scan and I believe it's more of ovary scan rather than follicle scan since my doc didn't mention anything. He is a fertility specialist and the issue is I have high fsh at 63 which was taken last year and he says my ovaries are not producing any eggs... He said even there is eggs they r gonna be bad quality so it's best I use donor eggs... Main prob is tt I'm not married yet and he says there is nothing to be done.. :( I'm happy I found my ovaries but sad Tt he said there is no way I can grow eggs on my own

Hmmmm the high FSH is what may be causing the amenorrhea then, I think? My FSH levels were always much lower than the normal. So when I'm given FSH injections, my body responds by growing follicles. If you already high FSH, I'm not sure what procotol the doctor will be using. Where do you live and what fertility clinic do you go to? I'm glad that you're being pro-active and learning about your health ahead of the TTC journey...you're already taking the right step :) Are you on bcp's right now? Do you get a period with the bcp? Keep doing research and asking lots of questions - you will definitely get answers. Also, I encourage you to post your question on Dr. Ramirez's online blog - give him all and exact details and treatments you've done for your condition. Give him as much info as possible in the post, b/c he only responds once. The link is: http://thefertilityblogs.com/fertility-tools/ask-the-experts/

You can see my reply from him at: http://thefertilityblogs.com/2011/01/dr-ramirez-on-primary-amenorrhea/

hopeful - good to hear from you. I'm glad I was of some help. Super happy that you get to start meds - at least the cycle wont go wasted. Are you going to be on generic HMG? Did you order it from the UK? Best of luck - I'm praying that you get a BFP :). Also, with me, my uterus hasn't grown with medication. The lining gets thicker every month but the actual size of the uterus has not grown and is still considered infantile. Hopefully that's not an issue. Again, I still have NO symptoms so am feeling a little hopeless - still going in for a test though.

Andrea - what's up?

Jen - Any updates on the meds that you going to be on? Have you been cleared to start IVF?

dreamygalzz - looks like you've already posted on Dr. Ramirez's blog. I'm so sorry for the response :( ... looks like donor eggs is the way to go. But HEY! at least you'll be carrying the baby even with donor eggs. I'm trying to look at the positive side but I'm deeply sorry b/c I know that is not the news you wanted to hear. I really hope there is a miracle and your ovaries spontaneously start working (like Dr. Ramirez said). *hugs to you*

Hi aid, yes I'm quite devasted by e news n pray for a miracle.... Thks for all ur help! Hi guys, do anyone of u ave high fsh n lsh n low estrogen level? My RE kinda pushed me aside n told me to come back to him when I get married so I guess my story will end with continuing with bcp till then... I'm aldy 30 and I'm damn worried my bf cannot accept it... He is having a hard time trying to accept my condition.

Hi aid, yes I'm quite devasted by e news n pray for a miracle.... Thks for all ur help! Hi guys, do anyone of u ave high fsh n lsh n low estrogen level? My RE kinda pushed me aside n told me to come back to him when I get married so I guess my story will end with continuing with bcp till then... I'm aldy 30 and I'm damn worried my bf cannot accept it... He is having a hard time trying to accept my condition.

Hey Shirley. I think all of us girls were told that our ovaries and uterus are super small, but meds work wonders! They can get things to grow! But really i think being on the bcp is the only thing you can do now til you are ready to have babies. Good Luck with everything! I'll be praying!

Hi Girls!
So i finally got the go ahead for IVF! I start my injections tomorrow night. I got all my meds in the mail today and OMG, SOOOO MUCH! The box was just huge! I am really ready for this. I just hope i dont mess anything up. I should be getting a calendar in the mail today or tomorrow that might give me an idea when i actually do the IVF. Crazy!

Jen - that's great to hear. Sounds overwhelming but also very promising. Best of luck!!! Keep us posted throughout your IVF journey. Would love updates here and there on follicle growth, lining growth etc.

dreamygalzz - I agree, bcp is the right way to go right now. When you're to have kids, then the appropriate protocol can begin.

dreamgalz - yes I agree with AKD as well about staying on bcp. I didn't stay on mine throughout my twenties and did have some bone loss because my estrogen levels were too low at times. I think that you shouldn't give up all hope just yet and when you're ready investigate further and get tests done to see exactly what is going on. When I was 25 an RE said I would never have children but 7 years later looks like that may not be true at all.

Jen good luck with the IVF!

AKD - any updates? I'm hoping things are looking better. I highly recommend the fertility yoga and have been looking into the massage as well. Anything to help relax us, get blood moving etc is good. Sue Dumais out in BC of Family Passages trained my fertility yoga teacher. Our class is a lot like a Yin yoga class or restorative class. Lots of focus on releasing tension in the hips.

Andrea - it's a BFN for me :( . I saw my RE on Monday and he said this was my strongest cycle so far (follies at 21, 19. 17 and lining at 7.9 with estrogen at 5600). So even he's surprised that it didn't work. Anywho, I got A/F and CD3 wil be tomorrow which means I will be doing my baseline scan tomorrow and here we go again. Good news is that I got some more HMG for cheap (will cost me about $300 for injections this cycle, which is super compared to the normal $1500 of repronex). I am doing acupuncture this round - our clinic offers it, my first appt is this Saturday. Lets see how tomorrow. Since being on injections, this period is probably my heaviest (still considered light in "normal" books I think). I also did pass some small clots this round, which is usually not the norm. No changes to this cycle, only adding acupuncture. Good to hear that you're almost about to start again.

Jen - How you holding up with all those meds? Have you started any yet? I spoke with my RE regarding IVF and he said that if I do IVF, I will still be taking the same injections just at a higher dose to get more number of follicles. I am rootig for you and hope this works. Please keep us updated as regulary as you can - you're the only person I know who's doing IVF with primary amenorreha - kinda give me hope too lol. Best of luck!!!

hopeful - how you holding up?

Awww I'm sorry AKD that it's BNF :( It seems like with each attempt you're body is responding better. That's an amazing sign!

I think we need to keep at it and be patient (patience is something I'm having to learn!)

I had a long talk with our RE about BMS, IUI and IVF. She said we don't need to try IUI or IVF just yet based on info from our last rounds. So we're prepared to give this more time and more attempts with a little increase to the meds to shorten injection time and also shorten time between attempts. We'll regroup after each time so she can monitor us closer. She said it takes time with women like us because this is new for our bodies. She also mentioned that sometimes these meds can kick start our bodies for us. I found one study involving men and this happened for 10% of the men in the study. Haven't had time to look into the details or search for more info but found it interesting and makes the injections a little easier to deal with.

I'm sitting in on a focus group here in Ottawa on March 1st to help discuss bringing awareness to the ON govt to have OHIP cover IVF. The current govt keeps saying they'll cover it if they are reelected but who knows if that will happen. Will be interesting to hear what the Toronto focus group came up with. The group is called Conceivable Dreams and is on facebook and has a website if anyone is interested.

Andrea - thanks for the info on the focus group. Really hoping something positive comes out of that. Please keep us updated.

I have a TMI kind of question for you guys. My RE asked me if I have an orgsm during BSMing with my DH. I told him no and that I never have with BMS. I do get them but only with stimulation and not during BMSing. He said we should try to time his ejcultn with my orgsm b/c that's how the sperm gets up there easily. K sorry I feel really wierd writing such a personal question. Does everyone else have an issue achieving this or is it just me?

AKD I've heard that it helps but I'm positive that you're not alone. I feel so much pressure after taking the trigger shot that it changes things with DH and it becomes more about the perfect timing etc. If you can than I think why not but if not don't add one more thing on the list to worry about. I find this whole process makes it even more difficult. I heard that even if you can a short time after he does it can help. Funny enough the Circle+Bloom has a couple downloads about how to help with this.

Also, in January I was reading about cerival fluid needing to be the right consistency for sperm to pass through and the fact that personal lubricants, except for pre-seed, can slow down sperm as well. Our clinic sells preseed and I asked my Dr if it was really ok to use and she said yes but not to use others. Something I never knew about and I'm sure most couples never think about either.

I'll be cutting out high glycemic index foods this time around. Inflammation in the body can make it more difficult to conceive. So bye bye sugar, processed foods, wheat, breads etc. The Acubalance fertility diet and Fertile Kitchen have some info about it. I say it can't hurt and it's healthier so why not? I'm also cutting out soy - we eat A LOT of it and I drank A LOT of it to replace coffee - not entirely sure how much you'd have to eat to have a neg effect on the body but I was eating too much and it made me really bloated so I'm done with that amount of soy.

We tried something different yesterday and the difference between my O and his E was about 30 - 40 seconds so we'll try that. Even though we are doing IUI, I'm going to mix in BMS this cycle as well b/c his counts are not an issue at all. It's been so hard for me to change my diet. I am a carb addict so breads, wheats etc. are so hard to give up. I don't have any soy so that's probably good. I do have about 1 cup of caffeinated tea per day - RE said that's not an issue. I used to have about 3 - 4 but I've cut down to 1.

I went for my day 3 scan this morning:
-lining at 4.2
-follies are small
-have 3 very small cysts
-will be doing HMG again (RE wanted Femara + HMG, but the assistant doc convinced him otherwise). So we will doing only HMG again
-I got them to draw my iron and B12 b/c I was deficient in B12 in the past and I know low iron can cause infertility issues as well
-Will be doing IUI again
-First injection is tonight so will be going back on Sunday for a follow-up

Jen - any updates?

Looks like you have things under control :)

Good point about the iron. I always feel tired towards the end of the injections because they take so much blood. Mine has been ok in the past but it doesn't hurt to check. I'm also going to eat more baby spinach.

I'm glad you're starting up again. I can't wait to call in my day one!